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Posted 8/5/2010 7:52 PM (GMT 0)
I have been suffering with chronic pelvic pain for around five years now. Two years ago it increased to an unbearable point. After 5 surgeries in 8 months, a hysterectomy, oophorectomy, laparoscopies, and countless staph infections, the doctors have decided that my pain is from adhesions brought on by surgeries and undiagnosed endometriosis. They also discovered SI joint problems and irritable bowel syndrome since the adhesion diagnosis. My bowel is covered in the adhesions, as well as my bladder, and everything is in the wrong anatomical position. Sitting and standing for more than a moment is unbearable. Reaching over my head, bending down, lifting anything causes a flare up for days.

I have tried massage, aquatic therapy, physical therapy, nerve blocks, medication, and talk therapy. Some things work better than others, but only provide minimal relief. I was enrolled in a program that was 3 days a week, with biofeedback, therapy, and stretching to improve my condition. They discharged me from the program when the pain outmatched the improvements I made. Currently I am on tramadol three times a day, Neurontin, Savella, and Vicodin. Most of the pain relievers cause constipation, which aggravates the pain by pulling on my bowels. I hate the stoned feeling all these medications give me. I tried the fentanyl patch and had to stop due to uncontrollable vomiting. Every time I try something new it doesn't seem to work.

Does anyone else have this issue? What is or was effective for anyone elses pain relief? I am tired of living my life reclining and apologizing to my boys and fiance for not being able to be the mom and partner I was before all this happened. I want my life back.

Posted 8/5/2010 8:31 PM (GMT 0)
Welcome to the forum. I am also a new member, who joined only a couple of days ago, but already have seen how friendly and helpful the other members of this forum can be.

Regarding the constipation, are you able to take a stool softener? That might be a gentle way of solving the problem and keeping it from cropping back up.
Posted 8/5/2010 9:16 PM (GMT 0)
  Hey Mom , Welcome to the forum , I'm sorry your having such a rough time of it .The effects pain releivers have differ with each person , unfortunately the only way to find out what works is to try them and go through it . Do you see a pain therapist ? They can help you with the frustration , and feelings of powerlessness that folks like us get when expierencing such harsh pain .Most of us see therapists because it effects you emotionally as well  , it sounds like your expierencing some of this .Please hang in there , things have every chance of improving , we'll support you here all we can . Mikel
Posted 8/5/2010 10:46 PM (GMT 0)
Welcome to the forums Monty's Mom...you have described almost exactly what I've experienced with pelvic pain - the adhesions, the surgeries, the pain, the pulling or "tearing" sensation when you move wrong, the constipation (absolutely horrendous for me, partly too because of the adhesions, and partly because of the anatomy)...yes, I would say you and I are practically twins in this area.

You can see in my signature below the different drugs I take. My doctors suspect I have suffered permanent muscle damage to the pelvic floor, possibly because of endometriosis, possibly because of the various surgeries, possibly because of my hip problems...who knows. I just know that I have constant pelvic pain with no real 100% certainty of the cause.

Heat is great when you are in pain. You might want to ask your doctor about other medications you can try to manage your pain. It's a lot of trial and error to get to a point of finding what works. You might want to ask about acupunture too...it can really help. Have you seen a pelvic physiotherapist? They have experience with pelvic pain and trigger points and can often help reduce the pain. If you have trigger points, they can recommend injections directly into the trigger points.

Adhesions are hard to deal with, because by removing them, you only add to the problem. I hope that you're able to find some things that will help you feel better. I know how hard it is to watch your life pass you by...so I hope that some of the suggestions you get here will help you to resolve your pain, or at least manage it better.

hugs
Pam
Posted 8/5/2010 11:57 PM (GMT 0)
Monty'sMom...

Welcome to the board; but I'm sorry for all that you are dealing with :( Unfortunately, the medicine thing is a trial/error thing to find out what works the best, with the most minimal side effects. It can take a long time to find that *right* medication. But I would really encourage you to hang in there and keep trying different options; I know how frustrating it can be, but hopefully you'll find the thing that works well at controlling your pain.

I have lots of little ones; and know firsthand how frustrating it can be to have chronic health/pain issues that change the person you are. It took me years to get to a point where I could accept the *new* me, the one w/ all these limitations and so forth. There were times I felt so much guilt and times where I definitely wanted to give up.

I had to work hard to find things that would give me the best quality of life, while also learning to accept that the things I have aren't going away. Over time, I've learned kids are resilient and can also learn compassion & patience during these times. We've all kind of learned that you have to just roll w/ what life gives you and make the best of it.

That being said, there's still days where I'd give anything to be healed... and those are the days that I seek the support of my friends here, who understand in a way that many others don't. So I encourage you to keep posting... and let others here help you through the tough times. Look forward to getting to know you better....

--Tina
Posted 8/6/2010 5:05 AM (GMT 0)

  Dear M Mom,

     Good evening. My name is Dani. I am very glad to have the oppertunity to meet you. I hope you find Healing Well to be relaxing, enjoyable place to spend your time. We have a great support group here full of caring, compassionate members.

     I am terribly sorry to hear that all your efforts at pain relief have failed. You asked some specific questions so I will try my best to answer. Please, know that what works for some, wont work for others. Also, we all have had peroid of time (sometimes years) where we had to try many different methods of pain relief before finding a combination that worked well.

  You asked ~~> "...Does anyone else have this issue?.."

    Yes. I am sensative to meds as well. Every medicine I use had to be slowly increased over time. This presents with some frustraiting situations though. For instance, it will literally take about a month of slowly working up a dose of medicine to find if it works or not. If not we have to start all over. If it does work or help, then we continue to slowly increase the dosage until the "type" of pain is brought down. It is aggrivating... but what else can I do?

   You asked ~~> "..What is or was effective for anyone elses pain relief?..."

     A combination of things. I have multiple "types" of pain. So, epidural cortisteroids done in a "series" along my spine. TeNS stimulation daily. Opioids, muscle relaxors, NSAIDs, Tricyclics..... personalized daily exercises. ALOT of heat. Some food restrictions (that one I have a hard time with) It just takes a long time to find the right combination of medicine and therapies. The goal isnt to make the pain go away.. Im not even sure anyone in chronic pain can achieve that.. rather to bring it down to livable levels.

     I went to a pain psychologist early on. I was taught how to re define who I was and how I lived with chronic pain as a part of my life. Myself, my environment, family dynamic... I was told from the get go that I would be in pain in some form or another the rest of my life. I think that has made all the difference.

     I hope you come to like it here. With people who can support one another through our bad times and our good. There are things and aspects about our lives that only others in chronic pain could ever understand. That makes a world of difference.

     It was so very nice to meet you. I look forward to knowing you better as time goes by. Stay strong!

*hugg*
  dani

Posted 8/6/2010 1:18 PM (GMT 0)
Thank you all for the welcome! It means a lot to me, and I think you all know how much.

I saw a pain therapist for months, but surprise! Insurance won't cover any more visits for this year. When I was in the 3-day a week physical rehab it used up all my visits for the year. I plan on next year spacing them out so I don't have gaps in therapy. It did help, but financially we can't afford the cost.

Miralax and stool softeners are mandatory. Every day I take all these crazy pills, sometimes cutting them in half is the only way to take the big ones. Dani, thank you for sharing your own sensitivity. For the longest time I have felt alone with how much the drugs affect me. Doctors also have issues realizing that what works for one is not always good for another. It is trying hearing for years that nothing is wrong with you, only to find a wonderful physician that understands and believes you, but has no idea what to do.

Pebbles you are right about the frustration of limitations. I am sorry you are all going through limitations and restrictions. Today I am choosing to stop thinking life is passing me by, and will focus on finding ways to do things with my family that will keep the pain down. I am dreading the weekend. Our church has a picnic with tie-dyeing, but I am in charge of the dyeing part. I know why I volunteered, it makes me feel great touching others lives with fun, but I dread the bending and sitting. Everyone there is very understanding though, and my friends, my sons and fiance will do all the lifting, reaching, and moving for me.

MsBunky, congratulations on your twin girls! That is so exciting! I will send good thoughts your way for you and your family. Heat has become my best friend. My hot water bottle goes everywhere with me and we are investing in a large heating pad to help with the in between times that the bottle can't be used. Thank you for responding. For the longest time I was told there was nothing wrong with me, it was in my head, and it helps so much to know that there are others who are experiencing the same type of issues. Feeling like a freak of nature doesn't help the struggle with isolation or loneliness that debilitating pain can cause.

I have dogs too. A golden retriever named Achilles and boston terrier/pug mix named Monty. They keep me walking, and along with the boys provide endless hours of laughs and happiness. Thank you all again for your support! smilewinkgrin

Posted 8/6/2010 1:32 PM (GMT 0)
Hello and welcome to our forum, but I am sorry for the reasons you found us! It sounds like you have been through a lot and could really use the friends/family you will find here. I do not have the pelvic pain to the extent you do, at all, but I do have quite a bit! I have several cysts on my ovaries and in my uterus....the biggest problem is the one on my ovary that is huge and causes my ovary to twist! I am sorry that you have problems with some meds...I can not take oxycontin due to the terrible headache it gives me. I wish I could because the pain relief was very good. I take MS-contin and find that it helps take the edge off, but at least it doesn't make me sick. Many of us on pain meds suffer from constipation and it is terrible! Like we need something else to deal with... right? I have been told by many that miralax taken daily works great....I just can not afford it right now! It is sold over the counter. My biggest pain problem is my lower back and nerve impingement caused from that which also has an affect on going to the bathroom at times! Anyway, just know that you are welcome here and we really do care about our family!! Keep posting!

Take care of you!
Beckey
Posted 8/7/2010 4:07 AM (GMT 0)
smilewinkgrin  Monty's Mom,

Welcome to the Forum. I've been around a little over a month so I am new as well. I am sorry you have to be here. I can relate to the feeling you are having with your fiance and kids. I feel that way all the time. As some of the very wise have told me, enjoy the time you do have. Understand that you have chronic pain, and it is ok that you have your bad days. If you could do it you would.

Have you found a specialists or pain dr. in your area that can be of help to you? You need a support system to get through this, and that includes some good doctors, so you can get back to some sort of normality. Feel better and take care. i am sending Gentle Hugs and prayers your way. Heather

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